My partner is now on the top dosage of co-careldopa his sleep is very disrupted and his jerking is now in legs and arms every night. He has been advised to try melatonin too but that is not helping at all!
Are they any positives of these meds please I can see it is all getting him down he is getting irritable and fed up which I totally get!! ![]()
That sounds really tough for both of you. Medication and sleep changes can be difficult to manage. It might help to speak with your partner’s Parkinson’s nurse or GP about possible adjustments. You can also talk to our helpline team on 0808 800 0303 or [email protected] for support. ![]()
Parkinson’s UK Moderation Team
Good evening Loulou I am 71 & was diagnosed in June 2023 … I am also on
Co-careldopa, 2 pills x 3 times a day. I too have had extreme sleep issues, including restless leg, insomnia and horrific nightmares. I too tried Melatonin which did not work. Also a number of other drugs which did not work either.
I have seen 3 neurologists privately in the past 4 months. One an expert in sleep issues who put the blame on the Co-careldopa. The last neurologist took me off the
Co-careldopa for 2-3 months. I found my sleep was a lot better but my balance a lot worse and I had a number of falls.
So we trialed going back on Co-careldopa 2 pills at 7.30am and 2 pills at 1pm. But not taking the evening pills at all. This has really worked for me and I am sleeping much better and my balance is good.
You don’t say whether you get any benefit from taking the Co-careldopa.
I have tried other Parkinson’s drugs which did not work. I find Co-careldopa brilliant for me.
If he is tired because he does not sleep one can understand him being irritable.
Any questions please ask.
Best wishes
Steve2
Hi Loulou
I can empathise with your partner. I was diagnosed in 2021 aged 53. I was prescribed Co-Careldopa, small dose initially but over time, increased to pretty much the max dose. I had the same symptoms as you describe. Lack of sleep was killing me. I was put on dopamine agonists but most of them did not agree with me. Eventually, I started on Opicapone, one per night and an overnight drug called Caramet. This helped my lack of sleep but during the day I was suffering from Dyskinesia and what I believe to be Dystonia. I am now taking Amantadine for Dyskinesia.
I suspected for a while that since I started on the Opicapone that the Dyskinesia and Dystonia were being caused by effectively taking too much Co-Careldopa. So after speaking to my PD nurse and Consultant, we agreed a reduction in my Co-C dose by 12.5/50mg at a time. Eventually I was able to reduce it for 3 out of 5 of my daily dose times. Dare I say it; I feel ‘nearly’ normal again. I’m actually considering this small reduction in a fourth daily dose. I’ll speak with my PD Nurse first.
Have a chat with the PD medical team and don’t be afraid to suggest possible solutions.
Cheers
D